Alex was diagnosed with a complex heart defect whilst in utero. My last two pregnancies were very closely monitored as I'd had a number of "obstetric adventures" after Vanessa had been born. Finally, after losing three babies in a row, Callum was delivered earlier than planned, but he was pink, alive and breathing. He spent a nerve racking (for us) first night in neonatal intensive care and was in a "headbox" for five days. Then, wonder of wonders, I was able to take Callum home.
My then husband and I never agreed on a permanent method of contraception. I was ecstatic with my final outcome of two children at home. And my marriage was rocky and I was having counselling. And that's how I ended up expecting another baby - my seventh.
The pregnancy was horrible for the first trimester. I was nauseated the whole time and had an almost five year old and a toddler who wasn't sleeping. Even so, I was really happy with this unexpected gift. I was sure that this baby would be a reward for all the dreadful pregnancies that had ended in disaster. I hung grimly on, waiting for the unpleasant symptoms to pass. Then the second trimester brought the suturing of my cervix and referral to the major women's hospital in Perth. My GP had nearly fallen off his chair laughing when I'd wanted to go to the local suburban hospital.
Because of my history, which had included a baby with a very serious heart condition (Christopher hadn't survived), I was sent to see a new paediatric cardiologist who had set up practice and could interpret foetal cardiac ultrasound. I first saw this lovely, compassionate man when I was nineteen weeks pregnant. The ultrasound was highly specialised and took about three hours. He asked me to return for a follow up scan in another two weeks to confirm the "four chamber view".
Which I did, just before Christmas in 1990. At the end of another marathon ultrasound, he delivered the stunning news. My baby had a very complex heart defect and would need open heart surgery, at least twice. My vision of a normal baby vanished before my eyes.
So, armed with this awful knowledge, I endured the rest of the pregnancy. After many anxious and stressful tests and alarms, Alex Christopher was delivered by caesarian on 11 April 1991. He went immediately to Special Nursery, where Luigi his cardiologist, announced him to be as well as he could be. Alex astonished us all by feeding well and easily and we went home after only nine days.
I used to joke that life with Alex became more exciting with each passing year. In hindsight, his heart defect was relatively straightforward and three operations later, Alex's heart was as good as it would ever be. By then, other problems had begun to emerge. All the tubes in his head - tear ducts, ears, nose and throat - were narrow and needed various ongoing procedures. His jaw was small and his chin receding. He had major dental and orthodontic work over ten years. Even more daunting was his diagnosis of autism just after he turned four.
From then on, I became Alex's advocate as well as his parent. I worked with and often challenged the education system and disability services. We undertook an intensive behavioural programme full time for two and a half years prior to him starting year one. He attended speech therapy, occupational therapy and a physiotherapy group. We added daycare to this mix. When he entered primary school, I set up and co-ordinated a social skills group for two years - until I burnt out! Fortunately, his speech therapist introduced groups into her practice. Alex participated in speech related activities (individually and group) for thirteen years.
Alex's post school years have not been easy. A passion for cooking and three hospitality TAFE certificates have not resulted in any paid employment. He volunteers at a cafe in suburban Perth with other young people who have disabilities. After a rocky start, I secured recurrent funding for him to receive domestic and social support and attend a Saturday social outings group. He is an enthusiastic member of the Baptists and enjoys his gym programme.
Alex sprained his ankle at the beginning of September. His GP told him to stay off his foot, use crutches to move and see a physio. Although Alex and Callum are close and Callum is his unofficial carer, I quickly realised this was part of my job description to collect Alex and bring him up to Heavenly Beverley, whether he wanted to or not.
Initially, after some resistance, Alex thoroughly enjoyed his nearly three weeks with us and declared that it had been a worthwhile holiday. I We attended physio and discovered that his peculiar gait was the reason he kept rolling his ankles. As I had long suspected, he needed orthortics for his feet. Whilst waiting for his orthortics to be made, Alex joined us at the House that Rocks - and had a surprisingly good time!
He and I had several long talks about his life, his opinions and his hopes and dreams. He was open and honest and much more adult than his intellect would have suggested. As well, I galvanised him into helping me around the house and with the cooking. He was always agreeable and willing to assist us both, even if his comprehension sometimes caused some confusion. Eager to complete stacking the wood for Michael in our wood shed, he successfully buried both Michael's axes under half a tonne of timber. Michael didn't know whether to laugh or cry.
Alex, armed with his brand new orthotics, waved me goodbye and caught the train back to Perth three days ago. His support worker picked him up from the station and took him home. Although we are pleased to have the House that Rocks back to ourselves, Alex's stay confirmed to us that he has become a wonderful young man and a worthy addition to the universe. Vale Alex. Love from Mum.
Alex in his element - the cup cake challenge at his high school. Naturally, he and his partner won.
Alex, Callum and Michael. Our wedding day - 2 January 2012.
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